All right, the big mess from part 2–Tourette’s Syndrome Facts–gave me a lot of questions to look at and a lot of ideas for discussion. Feel free to look back at that post but know that it basically amounts to a messy brainstorming session. What I am going to do from now on in this series is to take some of the comments from that post and do my best to address the individual issues from each comment in its own article. Whenever possible I am going to share suggestions for things that I believe are worth observing. For people with Tourette’s who read this, please know that I cannot promise anything but my opinions and anecdotal evidence from my own situation.
And for the parents of children with Tourette’s Syndrome, some of the things I will be talking about trying won’t really be on the table for energetic kids who would be bouncing off the walls in any case. But posts like today will give you suggestions for things that you can observe, which will hopefully lead to asking better questions and help you track data other that “yes, there were tics today.”
All right, let’s dive in and see what happens.
My own tics: movement initiated, location specific
I can’t look back at the tics I had as a child, but I’ll talk with my parents and see if they would agree with any of the ideas I’m about to propose and discuss.
Also, please keep in mind that I’m not having many tics these days, so my observations are based on the recent past.
As an adult, and more specifically over the course of the last year, I have noticed that a certain situation almost always induces the urge to have tics. It is simply when I experience a drastic change in the movement or position I am in.
For instance, imagine that I started walking down a very long hallway. For the first 100 steps my tics are absolutely horrible. But then there is a gradual decline in severity as I become accustomed to what I am doing. The simple act of walking, the repetition of the steps, the way my limbs move through space and the locations that my eyes focus on all become routine.
At the end of the hallway is a chair. I sit down in the chair and, nine times out of ten, boom! The urge to have tics is back. I have just experienced a drastic change in what my body has grown accustomed to. I was in motion. I was standing upright. Now I am inert and seated. If I stay seated long enough, the urge to have tics will gradually subside, even if the severity looks unchanged to an observer.
When it is time to stand up and walk back down the hallway–you guessed it, the first steps will be the most difficult in terms of the symptoms flaring up.
I have entertained a lot of different associations with this. You’ll notice in this series that I will never use the word cause. I think the word makes people stupid, or at least less curious. Solving this neurological puzzle for me meant throwing all the dogma out the window and starting from scratch. So, associations, not causes. This is good for a number of reasons, but the most trenchant, in my opinion, is this: as we run experiments, we will occasionally prove our hypotheses wrong. If we’re locked into dogmatic ideas then this could be a traumatic event that requires unlearning. With associations, we can simply play the interested observer and move on to the next experiment.
Okay, tangent over. My association with the shift in positions and greater severity of tics is that the body is always learning. It is always trying to do what is best for it. Whether sitting or walking, the body gradually grows more comfortable and the stress of the tics lessens. The stress is being resolved somehow through the sameness of whatever position I find myself in for a prolonged period. Then, when things change, everything is stirred up.
Moving limbs, moving eyes, a change in our breathing pattern: so far, I have every reason to believe, in my case, that these things contribute to my flareups.
I have noticed particularly that my own levels of stimulation seem highly associated with the way my eyes take in the world as I move. Something as simple as closing my eyes briefly when I change from seated to walking, or vice versa, can make a huge difference.
When I move from one phase to the next, I make the maintenance of my breathing pattern a priority. If it changes noticeably with the shift, it seems to change everything. I’ll talk about breathing more in the next post.
From room to room
Back to the eyes. I find that my urges increase when I move from one room to another, particularly if the room I’m coming into is noticeably brighter than the one I’m exiting. Public restrooms are the best example I can think of, but hospital corridors are a close second. Sports bars with blinking TVs everywhere. Even moving into a well-lit neighborhood after driving through a dark stretch at night.
So far, if I close my eyes–minus the driving example–when I move into the brighter room, I do better.
I’m going to leave it at that for today. So if you have Tourette’s Syndrome, please run these experiments. Get a notebook or use a voice recorder. Note your sensations as they come and go.
- What position were you in?
- What was the lighting in the room?
- Does your day require you to move through various lighting levels frequently?
- Can you control your breathing during the most drastic movement shifts in your day?
- Seated or standing? What’s easier more often?
- Does closing your eyes during movement and environmental transitions resolve or maintain the stress
And parents who read this, get your kids to participate if they can focus, but get your own notebook, track your own data, and see if you can spot some trends. There are no answers without questions.
And on that note, if you have questions, please ask. If I can answer them, I will. If I can only speculate, I’ll say so. And if this all sounds so simple that you wonder why your doctor never mentioned trying any of this, I’ll take that as a compliment.
Clarity and progress. Better questions lead to better answers.